The liquid food mission

Ok this is just not funny. Because of those eosinophls which have increased and caused havoc in the esophagus we are now in this liquid food drama with Lini. We need to get food into the stomach without irritating the esophagus because that is very painful for Celina.  On top of it, it must be as free as possible of animal proteins because they seem to cause the worst. This is happening by NG-tube which we anyway have but only used for water and maybe Peptamen for a while. Why is the tube still in??? Because the coordination between eating and breathing and swallowing is easier then the drinking and swallowing and breathing which is the cause that we do not get enough fluid into Celina by mouth and need to use the tube.
Now the root of this is another story, which I will tell in my next post and that is the one you should not miss. Its amazing and not possible without God's wonderful creation "The Human Being" and his bodily ability.

Anyway back to this interesting mission. With the liquid food diet we seemed to have won the last 6 weeks long battle or maybe I should say years of battle. Well, Celina is back to normal or at least no spasms anymore yet still a little tired. But there is no time for mommy to be tired.

Last Saturday we were discharged from hospital with a feeding machine, a blender borrowed from the dietitian, a bit of Neocate back up and the mission to make liters of liquid food. Oh ja and not to forget 4 different recipes. Well they all 4 have chicken liver in it. I eat them but am not very keen on frying them. Hey for my Lini I do it all.

I had made one liter still for in hospital because the dietitian wanted to run a trial to see if the consistency is right etc. That first liter wasn't bad.

On Saturday afternoon I wanted to make 3 liters so that I could enjoy the rest of the weekend. I thought if I do a liter of each recipe I would have 3 days off. The first liter was the same I made for hospital already and that went well. Recipe 2 with beetroot was a little too thick. That's not good because that will not go well through the machine. And then there was the homemade coconut milk. Quick and easy with the blender. That should be easy. It was just when I wanted to take the jug off the machine it turned in the wrong place and I had my impressive homemade coconut milk all over the machine and table top. The clean up took me a while since the stuff is very oily. So much for the perfect German.

When I was finally done with liter number 2 it was late and I was just exhausted and not quite sure if I would cope with this.

Well, my Sunday went for liter 3 and 4. Not much better. The stuff got thicker and ticker. No, no, no this isn't fun at all.

Monday I had a break. Well kind of since there is still the washing and my hubby and myself for that matter need also some food. And somehow the liquid feeds need to get into the machine and started. By the way the machine also got its own will. I could just not get the running times right since the food is thicker then the milk. We have single feeds(bolus feeds) during the day and consistent feeds at night for 8 hours at 70 ml/hour. Those night feeds were the worst. Sometimes the machine started beeping already at 5 where it was supposed to go off at 6 or at other times I woke up at 7 and it had just started beeping.
And then there was still the clogging of the machine. The blender must have not properly liquidized the liver and clogged up the pipe. Great the giving set was only 2 days old. I can't afford this. Oh no. I started a new one and the same happened. How am I getting through with the couple of giving sets I have if I go on like this? I started straining all the foods from this batch and then started the next set. Thank the Lord this time it went through. And somehow those sets are build that you can't get the blockage out. So at least did I think. Well, was I wrong. Clint came home and yes I had almost forgotten about my very own McGiver and thrown the second set away too. With patience and skill he saved the giving set. McGiver saved the day and I felt a little better.

Tuesday I did my next batch of 3 liters and I got it done in a days hard work. Falling half dead on my bed at 8pm trying to stay awake to put the machine on for the night feed at 10.

Yet again two recipes were still to thick in spite of changing the recipes a little. I really don't want this. Can't I just stuff some food in the mouth of my child like any other mother??? Do I have a choice? Not really, at least not at this very moment. Is this traumatic? It could be ......without God, definitely.  Am I a person to give up? Naaaaa Germans don't give up they are naturally stubborn, I heard people saying. Well maybe there is a bit to it.

I am getting better by the day. The day feeds are less stressy and I have developed a routine that makes things work better and quicker. The night feeds? Don't even ask.

And then there are 2 little oral feeds. Na that is what I like. Since we have something else coming up I have to keep myself together and not go over board and be nicely patient. Yes I am pointing again to our exciting upcoming event. Yes watch out for my next post.

Today I did my 3rd batch. And yes it is going a bit quicker now and is not taking the whole day anymore. Yet still some of the stuff is too thick. I am  getting there slowly but surely. Give me another week and I WILL get it right. And the kitchen looks every time like a bomb has exploded and smells like chicken liver. I don't know how long I can take the smell. The beetroot calls for special care if one doesn't want to have red splatters all over the show including my own clothes. Maybe I should get myself an apron. Ag ja and then the dietitian came around today. She worked over all the recipes again and changed them a little. Hopefully that will make things easier.

Lini in the meanwhile is well and even laughing sometimes.  Since she is out of hospital she is very peaceful and has no spasms anymore. She is very alert and focused. She follows everything that moves around her. This is really amazing to watch. Celina will also not go back to school this term because it is to risky for her to still catch an infection before that exciting up coming event.

Sorry, no pics of my hard work in the kitchen. Anyway don't know if you would find me inbetween all the dirty dishes.

If it wasn't for God this week would have been so much worse. He carries me. He lifts me up. He loves me. I am His daughter. That's enough to go on forever.

Thank you Lord for your faithfulness. And thank you for a husband that always tries to encourage me.